Do You and Your Doctor Agree on the Severity of Your RA?

We’d like to think that medicine is cut and dry and always based upon objective science. We get a blood test, take a drug, and get better. But most diseases and conditions don’t resemble this model. Complex autoimmune diseases like rheumatoid arthritis entail processes that involve numerous variables and some levels of subjectivity. Diagnostic measures for RA include counts of swollen and painful joints and various blood tests. These measures have some level of accuracy but blood tests like rheumatoid factor and general levels of inflammation don’t always show positive in patients with RA symptoms. Disease aspects like pain, morning stiffness, and fatigue involve subjective perceptions. Attaining agreement between patients, measurement tools, and doctors can be critical to diagnosing and treating the disease.

Over the years, numerous measurement tools have been developed to help doctors determine extent of RA disease activity. These measures include the HAQ, DAS 28, CDAI, ACR 20, and RAPID 3, among others.1,2 These survey-type tools usually focus on joint activity, swelling, pain levels, disability. Some, like the DAS 28 include blood tests in the assessment (28 refers to 28 joints – the number of RA affected joints). Your rheumatologist may have used one or more of these tools for initial diagnosis and to monitor treatment effectiveness over time. These tools are also used for drug development and testing. Unlike objective physical measurements like weight or height, these tools involve some level of subjectively based on perceptions of the patient, doctor, or both. In a recent study, researchers demonstrated that doctors and patients sometimes agree, and sometimes disagree on some of these measures.3 Occasionally doctors and patients completely disagree.4 One group of researchers noted that patients tend to focus on pain while doctors focus on blood tests.5

Last autumn I attended the 2013 American College of Rheumatology (ACR) annual conference. At one research session, a group of Canadian researchers presented a paper titled “Can People With Rheumatoid Arthritis Self Monitor Their Disease Activity?”6 Their goal was to compare doctor and patient assessment of disease activity. While the authors stated that moderate agreement between rheumatologists and patients was found, it does not address the fact that after adjusting for chance agreement, there remained between 25% to 49% disagreement depending on what measurement tool was used. This result indicates that patients and doctors don’t always see eye to eye.

It is certainly the case that patients may overstate their symptoms. It is also the case that doctors may understate or outright dismiss symptoms. But the bottom line is that the patient is the one who lives with the disease on a daily basis and they know their bodies better than anyone. Open communication and compassion on the part of a doctor can go a long ways to helping develop treatment plans and monitor disease activity. I’m fortunate to have a very caring and understanding rheumatologist. At every visit, the first thing my doctor does is to ask me how I’m feeling and to carefully listen. This conversation always leads to a discussion about treatment effectiveness and needed modifications.

More work is needed in order to bring RA patients and rheumatologists closer into agreement about disease activity. Fortunately, a researcher received funding and is conducting a study on including patients’ views of the disease in diagnosis and treatment plans.7 Better and more accurate measurement tools and blood tests are needed. Positive patient-doctor relationships need to be fostered. As a patient, you have a right to be heard and speak into the diagnosis and treatment process.

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Thankfully I have a rheumy who also listens to me and tells me that I have a say in my treatment plan and that he can’t decide everything because he doesn’t feel what I feel. I’m scared of what will happen when he retires later this year. The only abnormal tests I had were the CCP AB, and the RF. I never have elevated inflammation tests, and I rarely swell up. Only when in a serious flare and even then it’s only in a few areas which I call my chronic hot spots. We are all individual with this disease and no 2 people present the same sxs.
Great article!

Loved this article! My first rheumy appt wAs dissappointing to say the least. All my symptoms were chocked up to fibro and even though my bloodwork has been abnormal it’s not abnormal enough. I KNOW what is going on with my body better than anyone so I disagree with him so into a second opinion. I’ve been told I have RA by two drs rheumy of all people says fibro move along. Wow!

I have a wonderful and intelligent Rheumatologist. He listens and is thoughtful in his response. Blood tests do sometimes differ from the final evaluation of pain, swelling and overall health both in the doctor’s office and in my own daily experience. I tend to contribute so many different symptoms to RA specifically, such as migraines, fatigue, insomnia… However, my Rheumatologist does try to help me look at things from other viewpoints, such as “maybe it is not related to RA”. This tends to happen more frequently when labs are normal and when I realize my doctor is communicating to me from a specific specialty view.

My conclusion is I have Autoimmune Disease first and foremost. Inflammation manifests itself in many ways, my immune system does not work normally and often times sends too many soldiers to attack what is perceived to be an invader. Even when the invader is simply an old farmer with his donkey walking down the road minding his own business.

Rheumatoid Arthritis is one way Autoimmune Disease manifests itself in my body. So when I try to decide if my doctor and I agree on its severity, I have to think about the bigger picture as well and keep in mind I am with a very specialized mind treating one aspect of a very complicated situation.

Excellent point of view Christy. It is a very complication situation and it is so difficulty to pin down everything that is going on. Oftentimes it’s a trial and error process. I’m glad you have such a good rheumy!

Since I have dealt with Crohn’s DIsease for over 40 years, I am knowledgeable about auto immune situations, so this does not scare me. If anything I feel more comfortable because I have had to understand what this is all about. This article has really helped me as I am with a new Doctor, and feel that if I can”talk” with him in his terms, things will be better. Thank you for this information. Some of the best medication we could get.

Thank you for this article. Being one of those people who has a doctor who dismisses my assessments of my symptoms, it is good to see an article of this nature.

In the last year I have come to the idea that ultimately I will be the one directing my treatment and have become more vocal about what I need from the doctor in instead of letting him dictate what treatment will be.

My doctor has been cooperative with my requests and I do listen to him when he has input or concerns. But taking back the power has been good for me, since I often feel powerless and frustrated with my RA, I should feel empowered to dictate my treatment.

My blood work always looks “good” to my doctor. And that always leads me to the question of if my blood work looks normal/good, then why do I feel like my joints are permanently rusty?

Hopefully as treatment and studies progress we can all have the ideal relationship with our doctors that helps us get to a better state of health.

I just joined the website this week and have been enjoying the collection of articles. Thank you again for sharing and informing!

Hi Gretchen, welcome to the site! I’m glad you liked the article. There is a balance between following a doctor’s expertise and listening to your own body. That “ideal relationship” as you call it is so critical.